Tuesday, August 4, 2009

Welcome to August

Welcome to August. Brooke passed his fifth month at South Davis two days ago and his eight-and-a-half-month anniversary in four different hospital settings—how time flies when you’re having fun (or even if you’re not). (But we are having some fun, believe it or not, even if it is mixed with really difficult times.)
It’s August—you can see the light changing from Brooke’s room, and he’s already noticing that summer is drawing to a close—it’s still dark when he gets his suppository at 5 am, and almost still dark when he gets bowel care about 6:15. Sometimes friends bring him a latte and the New York Times before his trach mask in the morning, but it’s light by then. We’re just halfway to the equinox. By the end of September we will have passed two equini (we’ve been debating about the correct plural) here at South Davis, and despite a lot of difficulties, we have a lot to celebrate today. Brooke passed over the four-hour mark on breathing—two hours in the morning, two hours and 25 minutes in the afternoon—--the former, watching Bringing Up Baby and the latter with a physical therapist working with his arms and hands for an hour of that time. What’s important is that he was able to do something else besides just breathing, like all the rest of us but a real gain for him. But there was also time for a kind of Buddhist meditation during these trach masks, watching thoughts move through his mind he says like clouds over the ocean, evancescing into nothingness. Bach helps. In fact, it would be difficult to do any of this, Brooke says, without Bach, whose music goes nowhere—simply plays with itself, simply enjoys its own endless play, endless variation, endless ingenious pleasure.
We have some sense of turning the corner after an extended (and depressing) plateau. Brooke’s mentor Dale Hull, himself a valiant spinal cord injury survivor, says that “plateau” is not in his vocabulary and constantly reminds us that recovery of sensation and function can go on well into two years and, albeit more slowly, even longer; he just celebrated the 10th anniversary of his own accident (playing with his kids on a trampoline) by running an underwater marathon, but also says he is still having return even if it is less noticeable to people on the outside.
In addition to the four hour and twenty-five minute trach mask today, Brooke is recovering sensation in his right arm, more or less dead until now, and sensation in the instep of his right foot. He can move his left toe almost at will. Those of you whose bodies are under your perfect control may think this is small potatoes, to be able to move your left toe voluntarily, but here it is huge. So is feeling sensation in your right buttock, even if that sensation is pain. Brooke managed to spend seven and a half hours upright in his wheelchair today, also an accomplishment. To add to all this, the occupational therapist and Brooke are working on a joystick to drive the wheelchair, rather than the current head array; this thanks to the patient work of this wonderful and amusing OT who never stops reminding us of his Basque heritage, not the least of which is conducting therapy sessions in Basque dialect.
So why the plateau? That seems to be part of the natural order of things in spinal cord injury. But there are seemingly related plateaus of the emotions as well—or maybe, in this case, plummetings. A couple of weeks ago we had a visit from one of Peggy’s wonderful cousins, Rainy Janus, who lives in New York state; she brought many little treasures for Brooke, including a digital photo frame onto which she’d loaded many remarkable old family photos and other pictures. While she was here, she and Peggy and Polly, Brooke’s long-term hiking (and skiing) buddy, went hiking in the mountains above Alta, just at the peak of wildflower blooms, and Rain took endless pictures, including one of Polly and Peggy sitting on rocks in the middle of a little stream, where they were all three having lunch. We showed these pictures to Brooke later that day, and he enjoyed them and their artistry, but the one of Polly and Peggy sitting on the rock triggered an emotion so strong it’s been with him since then. This is an incredibly painful emotion, he is able to say now, the emotion of not being in the picture where he normally would have been. Then this weekend another out-of-town visitor came, Phyllis Rose, a writer-now-photographer from New York who was a classmate of Brooke’s at Harvard, and she brought spectacular photographs she’d taken of southern Utah trails we’d hiked on many times. Gorgeous photographs, in huge, enlarged size. These are also trails Brooke can’t expect to ever hike again. But somehow, these two sets of photographs frame another part of what might be called the recovery process: the outbreak of a new and more painful wave of realism about what the future may hold, but at the same time an accepting, if not yet embracing, of this realism as a way of moving on. It seems as though these two sets of photographs are bookends so to speak around this painful plateau, a deeply important stage in going on, and we’re grateful (as odd as this sounds) to both Rainy and Phyllis for showing them to us. Reality is important, after all.

Besides, somebody just reminded us about something else Churchill said in addition to “Never, never, never, never, never give up”: “When you’re going through hell, keep going.”

Concluding warning about plateaus: You can’t really tell when they start, and you can’t really tell where they end. Coming to understand this is part of this, uh, ongoing adventure.

PS. Thanks to those of you who are writing in to this blog—this really means a lot to Brooke as a way of keeping in touch with you--and as a way of still hearing someone say “awesome.”


T.R. Hummer said...

Hi, guys: It's awhile since I posted, but I've been reading the blog faithfully: thanks for keeping that going, in addition to everything else. Brooke will appreciate this, I think: I've finally (after 8 straight years, plus a good many other nonconsecutive eons) given up all administrative work and am back to doing "nothing" but teaching and paying attention to my own writing; that's working well. I'm doing a lot of blogging, and if you are interested in such things, you can find my "aggregator" blog at www.consciencecontinuum.blogspot.com -- if Brooke is in touch with computer screens at all, it might amuse him.

Meawhile, I'm thinking of you folks all the time, and rooting for you. I promise to comment more often.

Best, Terry

Marilyn McLaughlin said...

Oh Brooke, I read this blog faithfully and every time I read it I say"Awesome!!" I just don't write it here. What a major feat it is to swallow such a bitter pill or reality and find sweetness and wisdom in its center. I know that without the hlep of my vipassana teacher Shinzen Young (you might want to check him out Shinzen .org) and al-anon I would never be able to unstick myself from some situations. John and I recently got back from Hawaii where I was challenged by some of my own negative attitudes. Its not that they in and of themselves are a problem, but getting stuck there is suffocating to me and all those around me. The state of my "insides" was all to dependent on my "outsides" and there was something in my outer environment that was very disappointing to me. I know , how is that possible in Hawaii. In the end I found myself thinking of you and how you pull every ounce of life out of all of this the good, bad and ugly. I tell myself that I would not be capable of that, but I guess one never knows. All of this is to say that though the lessons and challanges you are going through seem unique to your situation and they are, they still resonate for me in a big way support this path of conscious living that we are on. I am just so grateful that you guys are able and willing to share it all so that we can all see how connected we really are. love love love, Marilyn

Stacey Katz said...

Greetings to you both from Boston, as I settle into my new life and home. I too have been reading the blog faithfully and sharing in the disappointment and hope with you. I think of you often, Brooke, as I walk around Harvard Yard. Sometimes what lies ahead of me, as I start all over from scratch, feels so overwhelming. And then I think of you and your courage and your strength, and I move forward. Your energy became a part of me when I saw you before leaving Salt Lake. I'm not sure if that makes any sense, but our visit is one of my last Utah memories, and certainly one of the most meaningful. I send you all my good thoughts and positive energy back at you. I wish for you all the best as you continue forward, looking back only to gather more strength as you feel the love of those whose lives you have touched.

George Constable said...

Brooke, I love that image of thoughts like clouds moving over the ocean and evanescing. So true--and different kinds of clouds: cumulus, nimbus, cirrus. And the stretches of blue between, sometimes empty, sometimes gauzy. And the clouds carrying rain or flaming at sunset....
I hope you and Peggy are working on that book. The world needs it. Meanwhile, I watch this blog like a hawk. As many others have said, it is an inspiration and a guide.

Dana Wilson said...


Like others I read your weblog faithfully. Your struggle, the people who love you, and their investment in your progress are truly an awesome testimonial to our humanity ; ordinarily I don't comment, just lurk.

However, the gauntlet has been tossed, and I rise to the challenge; the plural of equinox is not "equini".

It's got to be "equinoces". That's pronounced Hispanically ... "eck-wee-noh-chayz".

The singular form comes from the Latin, "aequus" (equal) and "nox" (night), so a Spanish plural makes historical and linguistic sense.

We must be careful not to confuse "aequus" with the Latin "equus", the horse genus, because we remember with fond tristesse those long ago nights of our youth, devoted to horsing around, equus-noces ... those bygone times of our youth when we thought we were stallions and would never see the day (or night) when we'd discover ourselves to be old plug horses.

That gets me to my other thought. Do you and Peggy have enough left to weigh in on the health care debate? It seems to me you've got an extraordinarily powerful tale to tell.

I can't imagine anyone better equipped to explain to the American public what an unexpected, catastrophic medical disaster can do to anyone at any time, and how their world can change in an instant.

We're not useless old plug horses if, like Lee's Traveller, we're still war horses, battle-worn and weary but ready to fight again for a just cause.

Hugs to you both.